Life members

Beth came to the Association in 2001 as National Executive Officer, a role she held for more than three years. She describes her highlights of that time as bringing Dr David Oliver to New Zealand for a 5 city whistle stop tour in 2002; successfully bidding for a Disability Information Advisory Services  (DIAS) contract with the Ministry of Health;  starting the journey of a service that covered all of New Zealand by employing a full time national fieldworker to support field staff and to “cover” service gaps; helping bring the Association to a more stable financial footing.

In 2007 she joined National Council and  was elected President. She used her time in this role to develop the capacity of the Association.  Under her leadership the Walk 2 D’Feet MND was established and the New Zealand MND Registry was set up.

Beth says that It has been a privilege and a pleasure to work with and for people with motor neurone disease. Over the years she met many unforgettable people who helped her grow and learn, making friends along the way.

In 1987, after not being able to complete a championship round of golf, my mother was diagnosed with Motor Neurone Disease. For her last year in 1990 she and my father came to live with me and my two young children. They were enriched by the many MND Association personalities they met, as my involvement widened.

We looked forward to seeing Jill Braddick (awarded a QSM for services to MND in 2004) and Roly Griffiths, from the Northland Branch who drove all the way down to Karori in their campervan and parked at our front door for National meetings.

That year I joined the Wellington Branch committee where the focus was on making it easy for people to get together. Regular meetings at the Puketiro Centre provided a place to chat and learn more about living with MND.

The people who poured the tea and prepared lunch, themselves had lots of experience of their own family or friends having had MND. At one Christmas gathering, Melville Tavita, 24, walked unsteadily across the room to join young friends in the Pacific Church Choir singing to us. We all sang Silent Night. The shared support and friendship that arose from such times together deepened our bonds.

Visiting folk at home was what a lot of effort was put into, both in the Wellington region and beyond - Blenheim, Nelson, Murchison, Hokitika, Mangaweka, Woodville and the Hawkes Bay.

Weekend visits to Hastings and Napier people continued for some years. A carload of members travelled north and split up in the Hawkes Bay. At the end of the day we would be in awe of how people coped with MND - their creative solutions to problems often appearing in the next Branch Newsletter.

Later, with the help of the Domiciliary Nursing Trust, we developed a home visitor role. The Branch committee found the responsibility of becoming an employer a little daunting, so initially paid the Trust to provide the visitor. In time the National Office would supply employer experience to overcome this. Soon a fieldworker role was to emerge.

A six-weekly Newsletter was prepared and posted to families, some health professionals and other support groups so that we shared ideas and meeting information.

Support took a variety of forms, for example writing letters, pruning roses, delivering meals, talking on the phone, even finding a pair of stretch denim jeans for one man, and lobbying for a quicker response to equipment needs or a bathroom alteration.

In 1996 along with Christine McKenna, I helped establish a separate National Office for the MND Association of NZ. Until then the Auckland Branch had also operated as the National Office.

This office was up the road from Parliament (handy for lobbying) next to good neighbours, the Multiple Sclerosis Society. Mary Newman became Executive Officer.

My hope was that the National Office would support and unify existing branches in a variety of ways - Auckland with its huge population, Wellington with its large geographical area (then Hawkes Bay to Hokitika), Northland, Christchurch, Hamilton and nurture new groups such as in the Bay of Plenty. The National Office needed to develop new policy in order to be representative of all our New Zealand groups. A small Executive met with Branch representatives to consider developments such as the fieldworker service and the production of information and promotional material responding to NZ needs. We standardised employment conditions for the emerging fieldwork service and opportunities for fieldworkers to meet and develop their knowledge and skills evolved.

Some highlights: Collecting after the Seekers concerts; goodwill and liaison with Australian groups; agreeing to use the blue cornflower logo and June 21st as a focus day; establishing a network of neurological organisations to share experiences; hospice liaison (boosted by Max Cavit, later an MND Association President);

Palliative Medicine 1998 Vol 12; publication of MND Association of NZ supported research; Saatchi & Saatchi volunteering to develop the first website in 2001, thanks to an introduction from Geoff Thompson, our Honorary Solicitor for many years.

Many people invigorated the Association. Geoffrey Perfect (Rotorua) who felt strongly that delay in making the diagnosis of MND disadvantaged people, funded the purchase of copies of a newly published text on MND to be given to the NZ Medical School Libraries.

Funding, in memory of Joyce Perfect, ensured the Association was a platinum sponsor of the NZ National Dysphagia Symposium in Hamilton 2000. The enthusiasm of speech language therapists Rosemary Hargreaves (Christchurch), Fiona Hewerdine (Tauranga) and Marg Foulsom (Melbourne) was so encouraging.

I was awarded Life Membership of the MND Association of NZ in 2004.

Living in Sydney in 1984 I received the news that my father had been diagnosed with motor neurone disease. A visit to my local doctor provided me with the news that he might only see a few cases in his professional lifetime and so began the search for information that all families face when this disease strikes. In 1985 we returned to NZ to help with my father’s support given the prognosis of 2 or 3 years to live.

My parents were part of the original Motor Neurone Society monthly meetings in Auckland and I became president for several years in the late 1980s. These were challenging years as we tried to establish a network of branches across the country, encourage people to become support contacts, get word out to doctors and neurologists that we existed, transition to a national and regional structure, and produce regular newsletters. And all of this on very limited funds with one part time paid secretary and everyone else volunteers.

However, we were driven by the experiences of people coming to us in search of knowledge having just been diagnosed and offered limited advice by the medical fraternity. Meetings and home contact were the essence of our existence in sharing information, ideas, aids and equipment to show sufferers that they were not alone.

As an accountant I continued to compile the financial statements for many years and in July 1995 was made a Life Member. Whilst no longer MND active it was a privilege to work with the many dedicated people and I await the day when a cure arrives.

Mary began her involvement with MND when, as Hospice volunteer, she looked after a man with MND while his wife had time out. His wife later became a voluntary fieldworker in the Waikato area. In 1998 when that good lady moved away, Mary took on the volunteer fieldworker role. Her nursing background coupled with compassionate and caring nature meant that with loving care she looked after people with MND in this volunteer role until her resignation is September 2004. At that time the Waikato Branch employed a part-time paid fieldworker.

Until 2002, the Waikato area had been supported through the Auckland Branch of the Association. In April 2002, with support and help from the Auckland committee (particularly Nessie Sweetman and Alan Malcolm), Mary was instrumental in setting up a Waikato MND Support Group. Later that year Mary became its first president and subsequently Waikato was given Branch status by the National Council of the Association. The Branch was small to begin with but under Mary’s leadership, and supported by a small group of her loyal and caring friends, the Branch grew until there was an average of 20 people attending the monthly meetings.

When Waikato became a Branch Mary was the Branch delegate on National Council until she relinquished the role to Meynell Murray around 2003. Mary was greatly respected for her extensive knowledge and understanding of the needs of people with MND and the supportive and positive way she contributed her ideas.

Mary and her husband Bill contributed much to the Association over many years not only with their time delivering equipment and the countless volunteer hours of Mary’s providing fieldwork support, but they also always supported fundraising efforts and also worked on the committee of the Waikato Branch.

I joined MND NZ almost from the beginning when it was inaugurated as the Motor Neurone Society in 1982.

Colin Meade, who drew up the Constitution, asked me to produce a publicity newsletter. I had just retired as MRO for Middlemore Hospital. By default - I had a Mac SE, one of the first computers at the time, and I could type – I managed to publish the newsletter for nearly ten years. Much to my family’s disdain, I covered the lounge floor and dining table with material every few weeks for at least a fortnight for cutting and editing.

The 22-page editions had a blue cover and were printed for a very low price as money was very rationed. Between Dorothy Nicholas, Dennis Hall, Nessie Sweetman and myself, we managed to include columns for patients, carers corner, latest research, field workers, regional notes, etc and of course humour!

Michelle's father and uncle passed away from MND around 1998 and her sister was diagnosed with MND in 2004. The BOP Branch of MND supported the family by supplying an electric Lazyboy chair, and when Michelle's sister passed away in 2005 she decided to join the BOP Branch of MND in 2005 to help the Association.

Michelle was elected as a council member in 2006 and was the Vice President during 2007 and 2008. She was elected as Treasurer in 2008.

In September 2013 Michelle was diagnosed with MND. She continued to be involved with MND Association during this tough time. "It has been my privilege and pleasure to work with MND over this time and I’m sure I’ll still be involved for as long as I’m able," she said.

Michelle was awarded Life Membership at our 2014 AGM in Christchurch. Unfortunately she was unable to attend the meeting. In her citation we said: “It has been under her watchful eye and careful management and control that the Association has grown to enjoy a real degree of financial stability. Council also benefits from the considered views Michelle offers in all discussions. We also appreciate her calm and positive approach, her big warm smile and her genuine caring. Michelle, your contribution to the Association is awesome.”

Sadly Michelle passed away in September 2016.

My interest in MND started when my husband Ron Hughes was diagnosed in 1985. We attended the first AGM of the Auckland Branch and went on the committee. I have been a member off and on since then. Ron died in 1987.

My interest was awakened again in 1991 after helping nurse another person with MND. On the prompting of Jill Braddick and Lee Hewetson we started a Northland Branch in 1991. I became the voluntary Support Worker and Chair of this group, something that became my way of life for 17 years.

During this time I was a member of the National Council for about 10 years, being National President for 4.5 years. I was humbled by being awarded a Life Membership in 2001.

Northland was honoured to have members Jill Braddick and Lee Hewetson who were so inspirational to so many others. It was Jill who put me forward for Life Membership. Jill was awarded a QSM in 2004 for her community service to people with MND.